Rare Mamas Rising: A Rare Disease Mom Podcast cover art

All Episodes

Rare Mamas Rising: A Rare Disease Mom Podcast — 56 episodes

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Title
1

Plugging Into the Rare Community

2

Hoping Through the Holidays

3

Rhythms of Rising and Recovering

4

Rare Mamas Book Release Day + A Special Reading from the Introduction

5

The Making of Rare Mamas: Reflections on Writing and Rare Parenting

6

Introducing Rare Mamas: A Rare Disease Parenting Book by Nikki McIntosh

7

Holding On To Our Identity

8

Spring Cleaning - Letting Go of Things that No Longer Serve Us

9

EP 47 - Tackling Therapy Burnout

10

Sharing Our Stories to Create Change

11

Building Endurance in the New Year

12

Holidaying Your Way

13

Growing Our Gratitude

14

Adapting Halloween Traditions

15

Loving With Every Breath with Breath Taking Author Jessica Fein

16

Preparing for a Planned Hospital Stay

17

Blazing Trails to Cure and Care with The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease with Founder Kristen Gray

18

Mother's Day Episode: On Bonding and Being There

19

Paying It Forward with TSC Alliance Director of Community Support and Outreach Shelly Meitzler

20

Transforming Love Into Advocacy

21

Charting the Unknown - Navigating the New Year Amid Uncertainty

22

Navigating Grief and Healing with Normal Broken Author Kelly Cervantes

23

A Rare Adoption Story with Rare Mama Monica Poynter

24

10 Minutes with Rare Mama Teri Furey - Larsen Syndrome Mom

25

Demystifying Differences with Author, Speaker, and Rare Mama Megan DeJarnett

26

Back-to-School Tips with Rare Mama Nikki McIntosh

27

Mid-Year Reset with Rare Mama Nikki McIntosh

28

A Moving Mission with The Stiff Person Syndrome Research Foundation Founder and President Dr. Tara Zier

29

Mother's Day Episode - Enduring, Planting, and Blooming with Rare Mama Nikki McIntosh

30

Driving Discoveries with Principal Investigator at Seattle Children's Research Institute and Assistant Professor Department of Pediatrics, Division of Genetic Medicine at the University of Washington and Rare Mama Kim Aldinger

31

Rare Mamas Rising Reflections with Rare Mamas® Creator, Podcast Host and Rare Mama Nikki McIntosh

32

Charging the Rare Community with The Disorder Channel Co-Founder, Global Genes Director of Community Engagement, Menkes Syndrome Advocate and Rare Dad Daniel DeFabio

33

Modeling Rare Advocacy with Thalassemia Advocate and Rare Mama Maria Hadjidemetriou

34

Finding Meaning and Purpose with STXBP1 Foundation Director of Development and Rare Mama Melissa Hioco

35

Lifting Her Voice and Envisioning Change with Through Evely's Eyes Founder and Rare Mama Tameka Diaz

36

Ten Minutes With A Rare Mama- Amanda Brundage, UFC Fighter and ALG13 Mom

37

A Big Reason to Be Here with FOXG1 Research Foundation Co-Founder, Executive Director, and Rare Mama- Nicole Johnson

38

Elevating Our Advocacy with Rare Action Network State Ambassador, Cure SMA Social Work Manager and Rare Mama Danyelle Sun

39

Turning Pain into Purpose with The Avalon Foundation President, Hypophosphatasia Advocate, Life Coach, and Rare Mama Deb Ayres

40

Father's Day - Ten Minutes With A Rare Dad- Tony McIntosh - SMA Dad

41

Motherhood Reflections - Exploring Our Journeys and Fostering Emotional Wellness for Ourselves and Our Families with NDF Emotional Wellness Director Carol Gelbard

42

A North Star In A Rare Universe with Cure Founder and Rare Mom Caroline Cheung-Yiu

43

10 Minutes with A Rare Mama- Catherine Oh-Congenital Nephrotic Syndrome Mom

44

The Passion Behind - Behind the Mystery TV Show with Co-Creator and Rare Mom Carri Levy and Writer- Producer Brittany Cocilova

45

Shining A Light on Undiagnosed Illnesses with Chief Clinical Officer of the NeuroBehavioral Institute, Undiagnosed Filmmaker, and Rare Mom Dr. Katia Moritz

46

Holiday How-Tos for Rare Mamas

47

Nutrition Coaching for Rare Mamas with Dietitian Nutritionist and Rare Mom Chardell Buchanan

48

The Power of Storytelling in Community Building with Loving Large Author Patti M Hall

49

Changing Lives One Child at a Time with Team Joseph CEO and Rare Mom Marissa Penrod

50

Raising Awareness with SMA Mom and Cure SMA Advisory Committee Member Mary McHale

51

Episode 005 - Lighting the Way With Once Upon A Gene Podcast Host and Rare Mom Effie Parks

52

Best Case Scenarios with Special Education Community Advisory Committee Chair; Rare Mama Rachel Niemeyer-Sutherland

53

Happy, But Different with Boston Children's Epilepsy Center Coordinator & Rare Mom Colleen Gagnon

54

Mother's Day Episode with A Rare Mama's Mama

55

Trailer - Rare Mamas Rising

56

The Sunshine in the Storm with Rare Cancer Mom & Advocate Stacey Walthers Naffah